Global Webinar Series - Summer 2018 Recap | Global Down Syndrome Foundation

Global Webinar Series – Summer 2018 Recap

 SUMMER 2018

Developing an Individualized Feeding Plan
for Your Child with Down Syndrome

What You Need to Know



Overview & Speakers:


There are many factors that impact the development of functional feeding skills in children with Down syndrome. In this webinar, presenters will introduce a framework for evaluating feeding in the areas of development, physiology, environment and medical status. For each area that impacts feeding, presenters will discuss accommodations that optimize meaningful mealtime participation. Specific attention will be paid to complex decision making for the development of feeding plans in patients with swallowing. Listeners will be able to identify resources to support a developmentally appropriate feeding plan.

Meet the team of experts:
Bridget Harrington, MA, CCC-SLP, Carol Spicer, OTR/L, Arwen Jackson, MA, CCC-SLP,
Jennifer Maybee, OTR, MA, CCC-SLP, and Margaret Spring, MS, OTR/L

The webinar presenters are clinical experts in feeding and swallowing at the Sie Center for Down Syndrome at Children’s Hospital Colorado staffing a number of medical specialty clinics including Aerodigestive Program and Feeding and Swallowing Program. These clinicians have contributed significantly to the advancement of clinical research and education for pediatric patients with Down syndrome.


Powerpoint Presentation: Click to Download

Additional Resource: Food Textures Handout



Jeanne in Littleton, CO:

1. What foods are good to help a child with Down syndrome get bigger and gain weight?

This depends on the child’s nutritional needs and reason for growth concerns. We would suggest meeting with a registered dietitian and consulting with your primary care physician to help determine the best foods.


Jill in Northbrook, IL:

1. Do you standardly do swallow studies on all your patients with Down syndrome due to the high incidence of dysphagia and aspiration in this population?

We do not complete swallow studies on all patients with Down syndrome. In most cases, when determining if a swallow study is indicated we look at medical co-morbidities and a feeding/swallowing assessment. Please refer to the Care Pathway referenced in the presentation for more details.


Lisa in El Paso, TX:

1. If aspiration is silent would you recommend a swallow study for all kiddos with Down syndrome?

As previously answered, we do not complete swallow studies on all patients with Down syndrome. In most cases, when determining if a swallow study is indicated we look at medical co-morbidities and a feeding/swallowing assessment. Please refer to the Care Pathway referenced in the presentation for more details.


Corinne in Chicago, IL:

1. My daughter was shown to have silent aspiration to all but nectar thick liquid consistencies on a video swallow study. Since that time she has significantly improved in her ability to eat. How often should these studies be repeated?

It is wonderful to hear that your child’s feeding has improved since starting on a thickened liquid diet. The timing of a repeat study is different for every child, however, some things to consider are your child’s age, changes in overall development, and any surgical or medical intervention that has taken place since the initial study. When deciding about a repeat swallow study we also consider if the child is appropriate for a Flexible Endoscopic Evaluation of Swallowing, as this can be a nice interval evaluation that does not expose a child to radiation. It may be best to contact the therapist that completed the swallow study or your child’s pediatrician to discuss when to repeat the study.


Marianick in West Palm Beach:

1. Why does my daughter (26 months) hold food in her mouth and what can I do to get her to swallow?
2. What can I do to encourage my daughter to pull food off of her spoon?
3. Why does my daughter seem to take no pleasure for any kind of food? Feeding is such a battle!!!!

Marianick, it sounds like a feeding evaluation would be beneficial to help answer your questions and understand why feeding is such a battle. If possible, try to find a clinic that has a multidisciplinary team that includes a speech pathologist, occupational therapist, dietitian, psychologist, pediatrician, and dentist.


Elizabeth in Lafayette, CO:

1. What are symptoms of and how do you diagnose and treat eosophilinic esophagitis?
2. What may be causing my child’s getting food and mucus stuck in his esophagus?
3. Why does taking Claritin keep my son from having 20 minute long vomiting episodes from food stuck in his esophagus unless he has other congestion from seasonal allergy, illness, or poorly chewed foods?

Elizabeth, these are great questions and best answered by a medical specialist, such as a gastroenterologist. The GEPD program at Children’s Hospital has a team of specialists with expertise in eosinophilic esophagitis that includes a feeding specialist (occupational therapy and speech therapy), so you may want to consider consultation with this team.  


Buddy in Jones, AR:

1. My son, age 43, has not had significant swallowing problems until this past twelve months and has had several serious choking events. Swallow tests show no obstruction. What should we do?

It would be good to clarify if the swallow test was an upper gastrointestinal series (UGI) or a video fluoroscopic study (VFSS). Often times the UGI is sensitive to assessing for obstruction in the gastrointestinal track and not to look at if food or liquid is entering the airway when swallowing. We would also recommend discussing your child’s pulmonary and gastrointestinal health with the primary care physician to determine if any additional subspecialty care is indicated. You may also want to reevaluate his feeding which can be completed by an occupational therapist or a speech pathologist.


John in Dallas, TX:

1. What are some of the first signs of trouble with feeding? What should I be looking for?

Some initial signs of feeding difficulties could include food/liquid refusal, growth concerns, coughing/choking with eating/drinking, difficulty moving food/liquid from the front to the back of the mouth, difficulty maintaining a calm alert state during feeding, self-limiting volume, prolonged feedings for an age appropriate volume of foods, and challenges advancing food textures.


Shaunee in Rigby, ID:

1. How do I get my child to use his teeth? He swallows all of his food whole.
2. How can I get my son to swallow what he’s drinking? He lets it spill out of his mouth and is not really interested in drinking any liquid.
3. How do I get my child to try table food? He is not even interested and will only eat baby food. I have even tried putting the food in a baby container, but it hasn’t really helped.
4. What are your team’s opinions and thoughts on vital e-stem electrodes in concerns to feeding?

Shaunee, it sounds like a feeding evaluation would be beneficial to help answer your questions. If possible, try to find a clinic that has a multidisciplinary team that includes a speech pathologist, occupational therapist, dietitian, psychologist, pediatrician, and dentist. We don’t recommend the use of vital stim in pediatrics due to the lack of sufficient research to support it. 


Sheila in Orlando, FL:

1. What should we look for when looking for a feeding specialist? How can you tell it would be a good fit?

We suggest asking the therapist what experience he/she has with feeding and swallowing and working with individuals with Down syndrome. You can also ask what evidence based approaches are implemented in therapy sessions. As with any therapy, it can take time to establish a trusting relationship, but you want to be able to be honest with the therapist, they are your partner in helping your child meet their potential.

2. How early do you suggest we get our child evaluated for feeding?

If you have feeding concerns, it is never too early to obtain an evaluation. The therapist will be able to assess current skills, determine if these are developmentally appropriate, and provide strategies to help support feeding development. The frequency and consistency of therapeutic intervention is child specific and the can change over time. For example, an evaluation with 1-2 follow-up therapy visits may be appropriate for some children, while other children may benefit from an intensive feeding model of care.


Jeffrey in Bethlehem, PA:

1. How can I ensure my son gets full nutrition on a gluten-free diet?

We would suggest meeting with a dietitian who can provide guidance on a nutritionally balanced diet in conjunction with working with your primary care physician.

2. I would like to know where to look for adaptive feeding utensils–particularly for cutting food and “pushing” food into a fork or spoon, for which adults normally use a butter knife.

The best idea is to consult with your treating occupational therapist to determine which adaptive equipment is most appropriate for your child given grasping patterns, visual skills, cognition, and current level of function. There is a lot of adaptive feeding equipment on the market and an evaluation for which equipment best fits the needs of this individual is important.


Noemi in Oakland, CA:

1. What is your best advice for children with sensory issues and restricted repertoire?

We suggest working with your occupational therapist and completing a sensory processing evaluation. There are several different areas of development that can be impacted by sensory processing concerns and it is important to look at all areas of sensory processing including factors in the environment which may lead to challenges during meal times. Food textures, food properties, food flavor profiles, utensil usage, and temperature of foods are all things that can be considered when evaluating the sensory needs of the child.

2. What is your best advice for children who are having a hard time chewing, swallowing pieces whole, and chewing with their mouth open?

It is best to understand the underlying reasons for the chewing difficulties. Is it related to dentition, oral motor function, oral hyper- or hypo-sensitivities, sensory processing, and/or postural stability. In general, we want to offer foods and bite sizes that match the child’s skills to promote a diet of safe textures as well as a trusting relationship with food. If a child is having difficulty with chewing, feeding therapy can help address the underlying contributing factors and advance food textures in a gradual manner to work on quality of skill and at “just the right time”. Oral motor, gross motor, and fine motor skills should all be in alignment. So, make sure your feeding specialist takes all areas of development into consideration and is aware of anticipated delays.

3. What are your suggestions in how to recognize silent aspiration?

Looking beyond the classic clinical signs of coughing and choking may help to determine if an instrumental assessment of swallowing is indicated. Such indicators may include the child’s pulmonary health, underlying co-morbidities such as a cardiac diagnosis, unexplained oxygen requirement, chronic congestion, growth concerns, or self-limiting volume. It is always a good idea to check with the child’s physicians to help determine the child’s overall medical status.


Elly in Tanzania:

1. My son Chadron will be four years old in September and he cannot chew, but he can swallow food in liquid form. Since I am in the developing world, I do not find help on how I can help him chew and swallow. If I try to give him small particles he will choke and never swallow. He will always try to take it out and it looks to me like he is choking sometimes. He will even have wet eyes as he tries to get the food from his throat. Is this normal for children with Down syndrome? What can I do to help him start chewing?

Telemedicine may be an option to evaluate your child’s current level of function and provide you with strategies to work on progressing oral feeding should the therapist deem this appropriate. Your medical team may also decide to evaluate Chadron’s swallow function.


Brandy in IL:

1. What are some medical issues that could present as a feeding issue?

There are many medical diagnoses that can contribute to feeding difficulties. Some examples include constipation, GERD, eosinophilic esophagitis, dysphagia, food allergies, difficulties with motility, and medication side effects.


Jennifer in Fowllerville, MI:

1. Can we have someone review my son’s specifics and offer suggestions?
2. He only eats turkey, BBQ, applesauce, rarely spaghetti and a few bite of introduced foods like soup, but not much. Never in his life has eaten a cracker. I really think it’s bite-related, but he is 21 and we still grind his turkey. Can we get a chew study done? We have done Beckmann and such when was younger with little results working in new foods.

We would recommend completing another feeding evaluation to assess current function and see if there are any therapeutic strategies to support your son in expanding his diet. Some thoughts would be to talk to the feeding therapist about ways to food chain, and ways to alter sensory properties to support improving variety. Behavioral therapy services may also be suggested to help increase variety. A complimentary approach of behavioral services, nutrition and feeding therapy may help your child expand his diet.


Julie in Gridley, IL:

1. How do you encourage or teach an older child to bite and chew?

Work with a skilled feeding specialist, dentist, and your medical providers to determine reasons why your child may not be chewing.


Elizabeth in Dallas, TX:

1. For children with DS who get alternative means of nutrition, what have you found to be the most effective treatment for encouraging oral feeding? I find most of my patients quickly refuse oral feeds and seem to lack the sensation of hunger.

If a child is deemed safe from a swallowing perspective to work on oral trials, work with the medical team and therapists to decide what food consistencies can safely be trialed first, how much volume, and at what frequency. Work with the gastroenterologist and a dietician to arrange tube feeding schedules to support oral trials for feeding. You may also include a behavior therapist to support positive interactions and meal time behaviors.

2. Have you found more success with more intense flavors when working on feeding children with DS than other populations? My patients seem to have hyposensitivity more often than hypersensitivity and delayed processing of taste (I.e. delays reactions to sour lemon juice or salt and vinegar chips).

This is patient dependent, but certainly is a strategy that has helped with oral awareness of where the bolus is. Low oral tone also contributes to difficulty clearing the oral cavity.

3. How do you determine which patients with DS would benefit from vital stim?

We don’t recommend the use of vital stim in pediatrics due to the lack of sufficient research to support it.


Jill in Denver, CO:

1. Tongues! My kiddo is drinking out of an open cup after years of drinking from a straw. However, she rests the cup on her tongue instead of her bottom lip. Is this behavioral? Functional? What should we do to support correct drinking posture with her mouth and tongue?

You can consider having this evaluated by a feeding specialist to determine if there are strategies that can be incorporated to change this drinking pattern. For some children, using the tongue is the most functional way for the child to successfully drink.


Maria in Fort Smith, AR:

1. My son is 17 and had duodenal plasty at birth and he has been on simply thick honey since age 1. I have in the recent year found the dangers of being on simply thick because of the xantham gum and its chemistry. My son is gluten sensitive and I cannot find a better replacement for the simply thick. I have spoken with his pulmonologist, a dietician, and a speech pathologist at our children’s hospital here. Because xantham gum is corn-based and he is gluten sensitive the simply thick gives him bloating, gas and other bowel, intestinal side effects. I am desperate to find a replacement preferably a natural source. Can you please help?

Consider working with your child’s medical team (dietitian, gastroenterologist, feeding specialist) on alternative thickening options. The team may use the International Dysphagia Diet Standardisation Initiative (IDDSI) to match the consistency of alternative thickeners to your child’s current level of thickening (i.e. honey thick) in order to achieve a level of thickening that continues to provide safe airway protection.


Riley in British Columbia, Canada:

1. I was wondering if your team had any research articles or experience to share around using more behavioral approaches and other motivating strategies vs. approaches that aim to remove pressure and follow more closely with Satter’s division of responsibility when it comes to supporting feeding development and expanding food repertoires in children with Down syndrome?

Riley, we are unaware of any articles specific to Down syndrome and behavioral feeding approaches. Although not specific to Down syndrome, one article you might consider reviewing is Food Refusal in Children: A Review of the Literature (Williams et al., 2010). Here are CHCO, we use a multidisciplinary approach with the focus on achievable goal attainment. Intervention may be provided by a speech pathologist, occupational therapist, and/or psychologist.


Raquel in Castro Valley, CA:

1. How do you engage the infant to toddler group better?
2. How do I get the best from my therapist and me as a team?
3. How do I best engage my husband/partner to work together to achieve goals?

Raquel, these are great questions. We would suggest establishing well defined goals with your child’s therapist and your partner. This may help prioritize and identify a plan that feels supportive to all caregivers. You may also want to consider communicating with your therapist about how you learn best (e.g. visuals, videos, one-one discussion, or in writing). Lastly, a social worker may be able to aid in navigating these types of conversations.


Lori in Morgan, UT:

1. Besides compensatory strategies (positioning, consistency, etc.), what remediation techniques can be used to improve swallow function in a young silent aspirator?

Some additional compensatory strategies to consider could be pacing and altering the bolus size. For young children who aspirate, there are no direct remediation techniques to improve swallow function. The best thing to do is to determine what the child aspirates on, establish a safe feeding plan, and allow time for the child to be healthy and grow.


Samantha in Colorado Springs, CO:

1. My son is now 4 years old. He was able to spoonband eat by himself, but now he is refusing to use it, he wants to eat by hand. How can I identify if he is struggling with this activity? How can I help him to feel interested again?

Consider an occupational therapy assessment to determine if there are ways to modify the task and help motivate and engage your son in feeding.


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